Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Taste

Fantastic Voyage

· · Leave a Comment

In 1966, when movies still cost 50 cents and popcorn a quarter, I went with a friend to the Peekskill Paramount movie theatre on a Saturday afternoon to huddle in the crowded balcony with a bunch of other giggly, wise-cracking kids and watch Fantastic Voyage.

In what has become a sci-fi classic, a team of miniaturized surgeons enter the body of a scientist to zap a life-threatening, inoperable blot clot in his brain; the scientist is the only person in the world who knows how to make the miniaturization state last more than an hour, a secret essential to U.S. Cold War military strategy.

The team travels in a mini submarine through blood vessels and organs, battling antibodies along the way and a fiendish saboteur in their midst. If that isn’t enough to pique your curiosity, the movie stars a very young Rachel Welch and won two Academy Awards for some pretty neat special effects before the days of computer animation.

I’ve been thinking of this movie lately and just added it to my Netflix queue. One of the curious aspects of living with a complicated disease for so long is that I’ve seen more and more of my own internal landscape in recent years. With each new complication of my scleroderma, there are tests and more tests. And with digital imagery and optic probes the norm in medicine, and X-ray results easily viewed on an exam room computer screen, I’ve seen some pretty fantastic, albeit sometimes disturbing, sights.

There are the basics—all the many, many X-rays of my deteriorating hands, with each iteration revealing less bone at the fingertips and more starbursts of calcium floating under the skin. There are some foot X-rays, too, more recent, to confirm calcinosis in my toes.

There was the MRI of my chest a few years ago, when a CT scan to check rasping in my right lung (a possible sign of interstitial lung disease) revealed a questionable spot. It turned out, my pulmonologist explained while we toured the results on his computer screen, that the spot was nothing to worry about, just evidence that I’d contracted histoplasmosis years before, probably while spelunking one weekend near Pittsburgh when I was in grad school. As he scrolled through the MRI, the inside of my lungs revolved like the ceiling of a planetarium speckled with tiny white stars. Some scarring, yes, but so far, nothing too debilitating.

There have been regular echocardiograms to monitor signs of pulmonary hypertension, a late-stage scleroderma risk. Sometimes I close my eyes and try to doze through this non-invasive but often uncomfortable procedure, which requires the tech to press a rolling probe all over my chest and ribcage. Other times I’ll distract myself by watching the dark computer screen, with its blue and red images of blood surging through my heart, like an animated deKooning.

More tests. A CT scan of my brain and skull X-ray one Fourth of July weekend when I started to go numb on the left side of my face. Cross-sections of my very own convoluted gray matter. Yes, that’s where all those thoughts and images and feelings ping around. No stroke, thank God; rather, an inflamed trigeminal nerve was the culprit. But there was something eerie about seeing an image of my own facial skeleton, not some Halloween mask—the exact position of my eye sockets, nasal cavity, cheekbones, jaw—shades of what will remain when the rest of me turns to dust.

Of course, there have been all the routine images, too—ultrasounds of my womb when I was pregnant with Emily, the squashed elliptical pancakes of my breasts as seen on a mammogram, a slew of dental X-rays revealing how some of the roots of my teeth are resorbing—a rare scleroderma complication. Fortunately, I slept through my colonoscopy a few years ago.

I’ve seen the pink marbled walls of my bladder and the black-and-white image of a PICC line snaking into one underarm vein and then the other, when the first side was blocked by too much scarring. Not fun.

Most intriguing, once we got past the unpleasantness of inserting an optical probe through my nose, was a view of my pharynx. This took place when I saw a speech therapy specialist a few years ago to evaluate problems with swallowing. There are times that I feel like food gets stuck in the back of my throat, and I worry about choking. She handed me items to swallow—crackers, apple sauce, Jello—tinged with Kelly Green food dye, so we could see if the pathway to my windpipe closed properly as I ate. It did, a great relief, and also fascinating. I thought of a camera lens opening and closing when you squeeze the shutter.

I’m sure, as time goes on and my scleroderma does its own thing and medical technology becomes ever more sophisticated, I’ll see even more of my innards. Not the kinds of images you put in your photo album, like pregnancy ultrasounds. But miraculous, nonetheless. Even if the reason we’re digging around with probes and such is due to damage caused by an insidious disease, I’m still amazed by the view.

We take our bodies for granted, all the inner workings so hidden beneath our skin. If we could see what was really going on inside, all the intricacies of our interior universe, how the balance here affects the balance there, would we take better care?

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

Feast of Freedom

· · 2 Comments

My hands are in pretty good shape today. A blessing, because I spent all of last Thursday and Friday cooking our annual Passover seder—a five course extravaganza that I manage to pull off each year.

I’ve evolved the menu over decades, based on what works, what doesn’t and what everyone asks for and complains about if I don’t make it. For the past few seders, I’ve switched from a meat-centric meal to fish and vegetarian entrées, creating a new challenge to find great recipes for guests who still wish I’d make that brisket.

And I’ve tried to modify my approach to accommodate my hands, which I’ve managed to wreck a number of times in the past when I went overboard with elaborate menu planning. I pace myself through two days of cooking, choose recipes that are fairly simple but taste terrific, and always wear disposable vinyl gloves to protect my ulcers as I cook.

Al serves as sous chef and kitchen first mate, helping with all of the chopping, slicing, jar-opening, package-ripping, utensil-retrieving and the many, many, many rounds of dish-washing and drying as I power through preparation of each dish. I could not do this meal without his help. Not to mention the fact that he takes care of the huge task of switching over our kosher kitchen to our Passover dishes.

But for all my planning and experience, on Thursday I was struggling. My hands were killing me because much of our Passover cookware is old and cheap (no point spending money on stuff you use only eight days of the year), and harder to handle than our regular kitchen utensils. By the end of the evening, after I’d worn out my right hand from folding all the meringue into the spongecake batter, I sat down, exhausted, and wondered why I was doing this to myself once again.

I could simplify the menu—this year’s included Egyptian haroset, a paste made of dates, raisins and filberts; pickled salmon; Persian cucumber and yogurt soup; a Moroccan salad of fresh oranges and greens with a cinnamon dressing; a main course of Turkish leek patties, Moroccan eggplant and tomato casserole, and steamed asparagus; and apricot sponge cake, strawberries, grapes, figs and chocolate for dessert.

It’s a lot of work. But the truth is, much as it takes a physical toll, I don’t want to give it up. The meal was wonderful. Everyone loved it. There were barely enough left-overs for our Sunday night supper.

My bottom line is this: I just don’t want to give in to my scleroderma. I am incredibly stubborn, a perfectionist and, yes, a card-carrying control freak when it comes to anything I’m creating.

In Gabriel Axel’s 1987 film Babette’s Feast (based on a story by Isak Dinesen), the heroine, a French refugee who becomes the cook and housekeeper for a pair of Danish spinster sisters, creates an exquisite meal for them and members of their small, austere church community, to thank them for sheltering her over the years. I won’t spill the delicious secret twist that’s revealed at the film’s end, except for Babette’s concluding line: When the sisters realize she has spent all of her money to create her amazing gift of a meal, she answers, “An artist is never poor.”

Creating a wonderful meal for people you love is an art form. It’s nourishment wrapped in beautiful presentation and delicious flavor. It’s a gift that makes everyone feel good, that enhances sharing, conversation and connection. For the Passover seder, it’s also a reminder of all that we have to be grateful for, living in a free country. I don’t entertain often because of my hands. But when I do, I go all out. And I’ll keep doing so as long as I’m able.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

 

Why I Don’t Eat Meat but Still Wear Leather Shoes

· · 3 Comments

Living amidst abundance, graced with super-sized supermarkets that devote an entire aisle to the vast variety of mustards and ketchups Americans supposedly crave, we struggle with the luxury of choice: What to eat?

Years ago, I decided, out of religious commitment, to follow Jewish dietary law and keep a kosher home. No more ham-and-cheese sandwiches or shrimp cocktails. I didn’t really miss the forbidden foods, and the discipline gave my life needed structure and spiritual focus. In recent years, I’ve added a new requirement: stay away from meat.

In part, my reasons involve how my scleroderma makes it harder to eat meat. This is personal. There is, to my knowledge, no definitive research about the best diet for people with scleroderma.

I’ve simply learned over the years that if I ate red meat, I’d wake up in the middle of the night with indigestion and reflux. Sometimes, I’d aspirate the reflux and sit bolt upright out of a deep night’s sleep, gasping for breath. Not worth it, even though I used to love brisket.

I also find red meat difficult to chew and swallow. I’ve had a few decayed molars extracted because I can’t open my mouth wide enough for my dentist to fill cavities in the back. Sluggish esophageal motility has more than once caused me to gag on meat that I couldn’t chew completely. So, dense foods are problematic. But I have zero interest in pureeing my food, as some recommend. There are plenty of creative, nutritional alternatives for these issues without resorting to pablum.

Those are the pragmatic considerations. My decision to eliminate all meat from my diet is also ethical, inspired by my daughters while they were still in high school. Mindi, our oldest, was the first to disavow meat after learning how animals are abused when raised for slaughter. Emily, our youngest, came to the same conclusion about a year later after attending a week-long seminar on animal rights.

Between hearing what they had learned and expanding my repertoire of nutritious vegetarian meals for growing adolescents, I decided they were right. The cons simply outweighed the pros. An added benefit, going vegetarian significantly simplified our kosher kitchen, since we now only needed one set of dishes, instead of separate sets for meat and dairy.

That said, I am not a vegan, nor am I a pure vegetarian. I still eat fish because of the health benefits of anti-oxidants, but I’m seeking affordable resources for fish caught in the wild. I also take fish oil every day, which has significantly helped me fight colds.

And I still wear leather shoes. My feet are difficult to fit and require custom orthotics, because the fat pads have thinned due to scleroderma. There simply aren’t enough comfortable vegan shoe options with removable insoles, made from materials that breathe and won’t cause my skin to break down. So, this remains a compromise.

For me, the shift toward vegetarian eating has been an evolving process. The first step was giving up pork and shellfish, and separating meat from milk, as a daily reminder of my religious values. This is the next major ethical step I’ve made in redefining my diet.

I have friends who are vegetarian purists, who won’t eat “anything with eyes” and who won’t wear leather. I admire their commitment.

But even as I try to honor the rights of all living creatures, hoping to do my part to create a humane world, I also need to put my health first. Without it, I’m no help to anyone, least of all myself. So, for now, I’ll stay away from meat, but keep eating fish and wearing leather shoes. Not the ideal solution. Not yet.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.